RESUMEN
This article is concerned with the practice of bioethics outside of the Euro-American and Anglophone settings in which it was first formulated. In theoretical terms, the article considers the frictions that arise when global-scale projects such as bioethics are introduced into diverse social and cultural settings. Methodologically, the article is constructed around the biography of an Indian medical educator trained in bioethics and working to promote the subdiscipline in the Indian context. The article describes the situated practice of bioethics and highlights the incommensurability of some of its key terms and concepts when practiced outside of the global North.
Asunto(s)
Bioética , Educación de Pregrado en Medicina/ética , Antropología Cultural/ética , Bioética/educación , Características Culturales , Ética Médica , Historia del Siglo XX , Humanos , India , Principios MoralesRESUMEN
This article outlines the development of IVF in Sri Lanka from the first successful births in the late 1990s and over the subsequent 15 years. It is based on anthropological fieldwork carried out at various points during this period. The piece focuses on the challenges entailed in achieving regulation of the new reproductive technologies against a backdrop of: (i) a bitter civil war; (ii) a complex mosaic of different religious traditions (specifically, Buddhism, Catholicism, Hinduism and Islam); and (iii) a shift towards neo-liberal marketization, particularly in relation to specialist and hi-tech medical interventions. The article concludes that 'soft' regulation operates both to avoid conflict around highly contentious issues in debates about reproductive rights as well as to enable commercially driven developments in technologically specialised areas of medicine.
RESUMEN
Ethical review by expert committee continues to be the first line of defence when it comes to protecting human subjects recruited into clinical trials. Drawing on a large scale study of biomedical experimentation across South Asia, and specifically on interviews with 24 ethical review committee [ERC] members across India, Sri Lanka and Nepal, this article identifies some of the tensions that emerge for ERC members as the capacity to conduct credible ethical review of clinical trials is developed across the region. The article draws attention to fundamental issues of scope and authority in the operation of ethical review. On the one hand, ERC members experience a powerful pull towards harmonisation and a strong alignment with international standards deemed necessary for the global pharmaceutical assemblage to consolidate and extend. On the other hand, they must deal with what is in effect the double jeopardy of ethical review in developing world contexts. ERC members must undertake review but are frequently made aware of their responsibility to protect interests that go beyond the 'human subject' and into the realms of development and national interest [for example, in relation to literacy and informed consent]. These dilemmas are indicative of broader questions about where ethical review sits in institutional terms and how it might develop to best ensure improved human subject protection given growth of industry-led research.
Asunto(s)
Ensayos Clínicos como Asunto/ética , Países en Desarrollo , Comités de Ética en Investigación , Ética Farmacéutica , Ética en Investigación , Formulación de Políticas , Pautas de la Práctica en Medicina/ética , Uso Excesivo de Medicamentos Recetados/ética , Creación de Capacidad/ética , Conflicto de Intereses , Experimentación Humana/ética , Humanos , India , Internacionalidad , Nepal , Sri LankaRESUMEN
It is now widely recognised that experiences of infertility are socially and culturally contingent. Drawing on reproductive narratives of 108 British-Pakistani Muslims living in Northeast England (collected from 2007 to 2010), we show that subjective experiences of infertility in this population can take many forms, from 'straightforward' childlessness to concerns about inability to fulfil a range of reproductive expectations, desires and obligations, regarding timing, gender balance and number of offspring. Extended family relations are pivotal in the processes through which reproduction (or lack thereof) becomes defined as problematic. Changing family aesthetics can thus shape individuals' experiences of infertility in important ways. A growing emphasis on conjugal relationships for some couples offers a greater range of reproductive possibilities (enabling, for example, a period of voluntary childlessness). For others, increasing nuclearisation of family life reduces the possibilities for extended families to 'plug the gap' by providing proxy-children and a normalised social role for infertile couples. Moreover, such social roles may be time-limited, creating serious challenges for the long-term childless, who find themselves caught 'betwixt and between' two disparate sets of values.
Asunto(s)
Familia , Infertilidad/psicología , Islamismo/psicología , Conducta Reproductiva/psicología , Adolescente , Adulto , Anciano , Familia/psicología , Femenino , Humanos , Relaciones Interpersonales , Masculino , Persona de Mediana Edad , Pakistán/etnología , Reino Unido/epidemiología , Adulto JovenRESUMEN
The global spread of clinical trials activity is accompanied by a parallel growth in research governance and human subject protection. In this paper we analyse how dominant ideas of the 'human subject' in clinical trials are played out in countries that are deemed to be scientifically under-developed. Specifically, we show how rhetorics of individualism, rationality and autonomy implicit in international ethical guidelines governing human subject research are operationalised and localised. We give insights into the ways in which new knowledge forms become embedded in practice. Using the recent upsurge in clinical trials in Sri Lanka as a case study, based on interviews with 23 doctors and researchers carried out during ethnographic fieldwork between 2008-2009, this article explores the tensions that arise for doctors involved with the promotion of bioethics and the attempts to bring local research governance up to international standards. The doctors and researchers intercept, interpret and critique the notions of human subject implicit in new forms of research governance. From their accounts we have identified two concerns. The first is a critique of dominant ideas of the 'human subject' that is informed by ideas of patiency rooted in paternalistic notions of the doctor-patient relationship. Second, 'human subjects' are seen as gendered, and located within family relationships. Both of these bring into question the research subjects' ability to give informed consent and compromise the ideal of an autonomous subject.
Asunto(s)
Investigación Biomédica/ética , Ensayos Clínicos como Asunto/ética , Consentimiento Informado/ética , Internacionalidad , Sujetos de Investigación , Humanos , Paternalismo/ética , Relaciones Médico-Paciente , Investigación Cualitativa , Sri LankaRESUMEN
This paper addresses the issue of how the scientific discourse of genetics is expressed in local idioms. The examples used are taken from fieldwork conducted in Sri Lanka and relate principally to Sinhala Buddhist attempts to socialise 'big science.' The paper explores idioms of both nature and nurture in local imagery and narratives and draws attention to the rhetorical dimensions of genetic discourses when used in context. The article concludes with a preliminary attempt to identify the ways in which explanations of genetic causality are aligned with notions of karma in the explanation of illness and misfortune.